Transitioning to Independence for Adolescents with ADHD
The transition from adolescence to adulthood is a multi-year process. What are some barriers to the adult transition and what components are included in a successful one? Though most people think of transition as a moment in time when teenagers move from pediatric to adult care, it is actually the final step in a very long process. We know that people with ADHD are more successful when they have the tools for adult independence.
In this Pocket MD podcast, Larry Brown, MD, offers pertinent information from research and real-life examples from his practice to explain how adolescence is the training ground for adult responsibility, particularly for youth with ADHD.
Larry Brown, MD
Lawrence W. Brown, MD, is a pediatric neurologist at Children’s Hospital of Philadelphia and director of CHOP’s pediatric neuropsychiatry program. He is also an associate professor of neurology and pediatrics at the Perelman School of Medicine at the University of Pennsylvania. He specializes in epilepsy and sleep disorders as well as behavioral disorders, including Tourette syndrome and complex ADHD.
Listeners will be able to:
- Identify ADHD symptoms throughout the lifespan.
- Describe the importance of interprofessional collaboration in treatment of ADHD.
Announcer: You are listening to Pocket MD, training on ADHD in children and adults.
Dr. Eugene Arnold: Hi, I'm Dr. Eugene Arnold, professor emeritus of psychiatry and behavioral health at Ohio State University and CHADD's resident expert. Dr. Larry Brown will be talking with us about the important issue of how people with ADHD can transition from dependence during childhood to a more independent life, taking care of their own ADHD. Before we begin, Larry, would you tell us a little bit about yourself?
Dr. Larry Brown: I'm an associate professor of neurology and pediatrics at the Children's Hospital of Philadelphia and the Perelman School of Medicine at the University of Pennsylvania. For many years, I've been running a pediatric neuropsychiatry program that focuses primarily on children and youth with ADHD, with Tourette syndrome and with high-functioning autism.
Dr. Eugene Arnold: Maybe we should begin by defining exactly what we mean by transition.
Dr. Larry Brown: Most people think of transition as a moment in time when you move from the pediatric to the adult sphere of medical care. But in fact, that's the last step in a very long process of developing the tools for adult independence as much as possible.
Dr. Eugene Arnold: What's the purpose of transition planning?
Dr. Larry Brown: The purpose of transition planning is to be consciously aware where you have to learn to be independent, where you have to learn to take charge of your life, and where you have to incorporate the challenges of your medical condition with everything else.
Dr. Eugene Arnold: What are the barriers to a successful transition?
Dr. Larry Brown: Well, there are many barriers. We have barriers from the family, from the patient, and from the pediatric provider who’s had sometimes ten or more years of interaction, trying to cut them off at a time, which is vulnerable during young adulthood, where they may or may not be able to follow through on their own. And then there are barriers which we'll talk about in terms of trying to find appropriate adult providers who can pick up the responsibility along with the patient to manage the condition.
Dr. Eugene Arnold: So, there are many possible things that could go wrong with this transition, many barriers to success. What are the components of a successful one?
Dr. Larry Brown: Eight different principles, but in fact, I boil it down to a fewer number. The first is that there is the expectation that there is transition, that there is a sell-by date where kids eventually become adults and move on to a different way of managing.
Dr. Eugene Arnold: Before you move to the other principles, this is a very important issue that you just mentioned. At what age should we expect to begin this transition?
Dr. Larry Brown: We would recommend that every patient who comes to a child neurologist or a child psychiatrist should be told that there is the expectation that somewhere between 18 and 22, that they would be moving on to adult care. That's not when the actual mechanism that we recommend, which we, by the way, did not invent. It's based upon other work that's been done in primary care, that the process of transition should seriously begin with puberty somewhere between 12 and 14, when children become adolescents and become capable of beginning to take on some of the mantle of personal responsibility, like knowing how to get a refill, being able to communicate what happens in an emergency to other people, take on increasingly age-appropriate responsibilities.
Dr. Eugene Arnold: So, you see adolescence as a training ground for adult responsibility. That seems like a useful axiom, regardless of whether someone has ADHD or not, but particularly important for ADHD.
Dr. Larry Brown: Exactly.
Dr. Eugene Arnold: I interrupted your enumeration of the eight principles, so, would you please pick up where you left off?
Dr. Larry Brown: Sure. There are individual points, but if you boil it down to as simple as possible, it's saying that there is going to be a transition, the various steps of transition, and then the conclusion. During the various steps of transition, one has to recognize that in any neurologic problem, but especially the neuropsychiatric developmental issues, there's great variability in how mature a child is and how willing he or she is to accept these things. It's amazing; we have kids who even get to college and still don't know what medication they're on, still don't know how they learn best and whether or not they ought to be studying in the morning or in the evening, how to adapt what the doctors are doing for them, using stimulants that wear off at some point, but then delay their willingness to sit down and study after the medication has long since worn off, and can understand why they're inefficient.
We have lots of other ways that we try to invest the kids with the maturation that they are capable of, of knowing how to self-manage their disorder, and how ADHD, for example, affects other things that are happening within everybody's life. As, for example, they turn 16 or 17, depending on the state’s driving age, how does one manage that aspect of driving? Do you make sure that you've taken your medicine that day? Because it's been well shown that people with ADHD certainly are better drivers, not during only the hours that the medication is useful for academics, but well beyond into the evening hours. For medications that work 12 hours that up to 16 hours, people who take a medication have been shown both with actual driving and with simulated driving, that they make fewer errors. And for many people that's a very important lesson to be learned, but it only is learned if we discuss it.
Dr. Eugene Arnold: And we can even cite published data showing that people with ADHD, if they take their medication, have fewer accidents.
Dr. Larry Brown: Absolutely, far fewer accidents. And similarly, we know that there is an epidemic in America of sleep deprivation among adolescents and young adults. And if you have ADHD and you're already challenged, and on top of which you're running on empty, it's just a perfect recipe for more problems than you deserve and that you need.
Dr. Eugene Arnold: In fact, sleep deprivation by itself can mimic ADHD. When you add the two together, then you've got a real recipe for problems.
Dr. Larry Brown: Absolutely. And that is one of the many things that we feel are important, not only to mention once, but to keep bringing up, that transition planning is not a onetime event. It doesn't occur the day before you're moving on, it's something that happens and needs to be discussed in small increments every year, because every year you're more capable, every year, the issues are slightly different. Intellectual challenges can add to this problem. And in transition planning, where intellectual disability occurs, we also have to think about whether or not the youth is going to be fully capable of independence. The goal is as fully capable as possible, but where that's not realistic, we have to begin to plan for that, because some of the kids that we take care of with ADHD and intellectual disability can do very well, can manage many parts of their life, but still need support for issues that are terribly important, like financial management or housing. So that we need to build that because the day that a teenager turns 18, they are considered medically independent unless otherwise deemed legally.
And for some kids, we have to prepare for that, so that power of attorney or guardianship is discussed long before it's a reality.
Dr. Eugene Arnold: You point out the important issue that ADHD can occur at all levels of intellectual ability. Geniuses can have it, and people with intellectual disability can have it and everybody in between.
Dr. Larry Brown: And, it’s a great equalizer.
Dr. Eugene Arnold: You mentioned some risks that adolescents with ADHD have—the driving issues, the intellectual challenges—but how about some other risks? For example, sexuality comes into play during adolescence. Are there risks there?
Dr. Larry Brown: We do know that with risk-taking adolescents, along with ADHD, again is a perfect recipe for problems with unprotected sexuality and serious risk taking with others. So yes, we see that. I've also had some very interesting experiences with risk taking. I had a patient with ADHD who said, I know that you would never support underage drinking, but let's face it, I'm in college and everybody does, but you also told me I shouldn't drink while I'm taking my medication. So there's a fraternity party over the weekend, so how many days shouldn't I take my medicine so I can go to the party? I mean, it's that sort of nonsensical, immature thinking that we're trying to help the kids to avoid.
Dr. Eugene Arnold: Well, of course, this feeds into the issue of peer acceptance, which was obviously driving the thinking of the youngster that you quoted.
Dr. Larry Brown: But I've had other kids—you ask a college student, do you drink? And he says, not much. And you ask, and what do you mean by not much? And he says, never more than a six pack at a time. That very same kid, some months later I found out, had been found on the side of the road after he had been hit by a car.
Dr. Eugene Arnold: So, that's another risk, is the fatality rate. And in fact, there are data showing that ADHD is actually a risk for early death and for a lot of chronic disorders that are associated with lifestyle, because of the impulsiveness and inability to plan ahead and think of consequences. Now, another risk, of course, you just alluded to, is the substance use issue. You mentioned alcohol, but what about other drugs also?
Dr. Larry Brown: I am aware that there is good evidence that diversion and abuse occurs at all levels, from junior high school, middle school, all the way through college and beyond. But I'm also aware of something that I only learned not long ago, and that is that any child or a young adult who shares their medication is at increased, much increased risk for abusing medication as well. And so this is something that we really need to address, about not only making sure that people with ADHD keep their medication to themselves, but if they are tempted because of peer acceptance issues, that it really is a very significant risk factor for their own health.
Dr. Eugene Arnold: And of course the risk of marijuana and smoking tobacco is even greater than the risk of abusing their prescription stimulants.
Dr. Larry Brown: And all of these things you would think would be naturally discussed over the years through the routine visits that happen. But, in fact, we found out that most of these issues are discussed rarely and inadequately, mostly because either there isn't time or the physicians themselves, if they're neurologists or developmental pediatricians, may or may not be comfortable with the follow-up questions once the Pandora's box is open. And what we are aiming for is to make people aware that these are issues that are just as important in terms of preventative care as they are in terms of dealing with the consequences after the cow’s out of the barn.
Dr. Eugene Arnold: Now, one of the things that happens in the process of maturation is someone who has ADHD becomes increasingly aware of the problems that they have. Very young children are in a state of denial and don't realize the extent of their problems, if at all. They tend to think the problem is the teacher or my parents or the peers, rather than that I have a problem. So, about what age do they begin to realize this? And what effect does that have on their self-esteem, their anxiety, their possible depression, and things like that?
Dr. Larry Brown: So, I think we would all agree that by the time a child is 12, that they are capable of sophisticated decision-making, so that we would in a study make sure that we get consent for them because they are, or should be aware, whether or not they actually take it on and accept that, or have good excuses not to, is something that we have to address in the individual case. Because I have much younger kids who really understand that this is something about them and they have resilience and they have strategies. And those kids do very well and learn. But there are all sorts of pitfalls and all sorts of curves in the road and bumps that will add to the usual challenges of adolescence.
Dr. Eugene Arnold: How do we get physicians to help with this planning process, this transitioning? They're pretty busy. Most pediatricians, for example, have to see a patient every 15 minutes.
Dr. Larry Brown: You're being generous. I believe it's seven to eight minutes.
Dr. Eugene Arnold: Well, in any event, it’s very quick turnover. How can they help with this without disrupting their whole schedule?
Dr. Larry Brown: So, we've thought about that as well and we have begun to think of, at least I speak for child neurology, we prefer to speak of the child neurologist as a child neurology team. We have a ways to go. Many places like the institution I work at have transition coordinators, and we have social workers, we have nurses. Many places are less endowed. But we have to think that this is not advanced science, this is common sense, and we need to work as a team. And we also need to make sure that part of that team is not only the medical professionals, but the parents, the patient, the advocacy groups, so that we try to make sure that people are aware.
The second way we're trying to help with this is to incorporate it into that electronic medical record to make it as seamless as possible. And so, we have systems in place at my hospital that automatically remind doctors at various ages that they should be discussing transition. And when they press on that button, comes down a whole series of handouts that can be printed for that particular patient.
Dr. Eugene Arnold: Are there areas that need further research?
Dr. Larry Brown: Oh, there are many areas that need further research. We need to know that there is an absolute benefit for the additional effort that we're putting in. That benefit either being in terms of improved quality of life or reduced pharmacoeconomic and medical economic charges or patient satisfaction or something, so that we can then translate this to charges that can facilitate the use of these principles on a broader basis where resources are scarce.
Dr. Eugene Arnold: Are there any other points that you would like to make that we haven't asked about?
Dr. Larry Brown: Absolutely. There's one very important point, and that is that everything that we're talking about implies that there is somebody at the far side of the bridge to pick up the work. By that, I mean, adult providers. And what many people need to know is that those children with ADHD, who are being managed by child neurologists, will soon find out that there are virtually no neurologists who manage adult ADHD. And that we need to build either a cadre of adult neurologists or accept that the culture of adult medicine is different than the culture of pediatric medicine. And so, for example, if I have, which I do, slightly high blood pressure, I don't see a blood pressure specialist, I see my internist. And my wife who has prediabetes, doesn't see an endocrinologist, she sees her internist. And for many people, adult ADHD can and should be managed by their primary care physician. But for those people who were being managed by the child neurologist, they need to consider somebody else to help to manage their ADHD or anxiety or mood disorder because the adult neurologist rarely will accept that responsibility.
Dr. Eugene Arnold: Okay, so let's see if we can summarize the points from today's podcast. It's important for people with ADHD to make a successful transition from childhood through adolescence to adult responsibility. And, in some cases, they may not be capable of that because of co-occurring intellectual disability.
Dr. Larry Brown: Or physical disability.
Dr. Eugene Arnold: In most cases they can. And they need to have education and support in negotiating the risks of adolescence, which could include things like driving, sexual activity, peer pressure for substance use, the increasing realization of the challenges they face, which could result in depression or anxiety. And there needs to be a complete team helping them with this, including their pediatric prescriber and other caregivers. The adult professionals who take care of adults being prepared to take on management of the problems.
Dr. Larry Brown: You summed up everything that I wanted to say. Thank you very much.
Dr. Eugene Arnold: Good. All right, thank you, Dr. Brown, this has been very useful.
Announcer: Pocket MD is brought to you by CHADD, with funding from the US Centers for Disease Control and Prevention, and in partnership with the Rainbow Center at Rainbow Babies and Children's Hospital.
CDC, our planners, presenters, and their spouses/partners wish to disclose they have no financial interests or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters with the exception of Dr. L. Eugene Arnold, MD, MEd, Dr. Craig Surman and Dr. Margaret Sibley and the wish to disclose research funding from commercial interests.
Planning committee discussed conflict of interest with Dr. Arnold, Dr. Surman and Dr. Sibley to ensure there is no bias.
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